“In the collective imagination, Parkinson’s is a man’s disease.”– Sabela Avión, Cofounder, Con P de Párkinson
When Sabela Avión was diagnosed with Parkinson’s in 2014, she was 38 years old. When she went to her general practitioner presenting unusual symptoms—loss of smell and tiny handwriting—she was dismissed: young and female, she didn’t fit the profile of the disease.
In the months after the diagnosis, when she would park in a handicapped spot, she would get judging stares, even from colleagues who thought she looked “normal.” Once again, young and female, no one could believe she had Parkinson’s.
Sabela was born and raised in Spain. “Spain’s a Catholic country,” she said. “Back when I was diagnosed, everybody knew the Pope—John Paul II—had Parkinson’s. Everybody knew Michael J. Fox. Some people knew Muhammad Ali.” But nobody knew about the young women living with the disease. Even Google had few answers.
She realized she could “stay home, feel miserable,” and wallow in her grief or do her best to stand up and speak out alongside other women. She chose to make her voice heard.
Young Women & Parkinson’s
When you’re 38 years old, like Sabela was when she was diagnosed with Parkinson’s, you “feel like you have your ducks in a row,” she explained. “You pretty much know what you want and what you don’t want in your life and in your career. If you have children, they might already be a little bit older,” giving you more personal space. “When Parkinson’s comes, it’s like all of a sudden, your ducks are thrown out of place.”
As women, she said, “we start asking ourselves, ‘What about work?’ ‘What about my family?’, because we’re taking care of all these people and responsibilities. Women have to juggle lots of roles. We are wives, we take care of the home, we might be moms, we might be professionals, too. And now we’re a person living with a chronic condition. How do you hold it all up?”
“It’s not easy,” she said.
Sabela works as a translator at the United Nations. It’s a stable job with great health insurance. She knows she’s lucky to be in this position. “There are a lot of women out there with jobs that fire them if they share that they have Parkinson’s disease. Or a lot of women who can no longer do their jobs because of the type of job it is. They don’t have help.”
In fact, Sabela believes women with PD are in a unique position—not only are they often misdiagnosed or dismissed, as she was, when they first present symptoms, and not only do they often have to care for themselves while juggling other roles and responsibilities, but there’s still very little information and research tailored to them.
“Something else that’s unique to women with Parkinson’s,” she said, “is that the medications we take may not work the same. This is something that we’ve known for a long time, but it’s rarely been talked about until us women started talking about it.” She explains that there’s beginning to be a big push to have research done with a gender perspective, since the differences in medication effectiveness extend all the way back to the lab mice. Most studies, she said, are done on male mice, “so the bias starts early in the process.”
To fully support the rising number of women with PD, systemic change is needed.
On a Mission
When Sabela decided to be part of the solution, she started in English. She had moved to New York by that time and, so, the community around her was mostly English-speaking. Plus, she found it hard to find resources in Spanish; not much was available.
She began with a blog, a place where she could say anything she needed to. Slowly but steadily, she wrote. One day, her mom emailed her a link to an article in Spanish about a woman with PD. She was interested. She decided to email the group behind the article.
The person who wrote back was Paqui Ruiz, who was diagnosed with Parkinson’s in her 40s. Paqui was living in the Canary Islands, which are off the coast of Morocco but part of Spain. Paqui agreed: there’s barely any information for women with PD, especially in Spanish. She wanted to start her own blog in Spanish that would, as she put it, “bring in some fresh air and get rid of the cobwebs in the corner.” She wanted to modernize: to bring young women into the outdated picture of PD as an old man’s disease. And so she did.
Sabela joined her. Today, they tease that while they only meant to open a window for a light breeze to blow through, what they got instead was a tsunami. It was the start of an ever-growing movement, a collaboration of young women with Parkinson’s disease across the globe who speak Spanish that has expanded to include radio shows, personal testimonies, advocacy, and more. It has become a full-fledged organization called Con P de Párkinson and a gathering place for women who are determined to be heard.
Women Have a Superpower
Sabela and Paqui have chosen to “make noise.” “Not to bother people,” she said, “but to make ourselves heard.”
Women in Spanish-speaking communities everywhere are hearing them. “We got a private Instagram message from a woman in Cuba,” who had been reading the stories they share of women living with PD. “She said, ‘Thanks to you, now I’m not ashamed to go outside.’”
“That’s major,” Sabela said. This woman was ashamed to be seen as who she is, afraid to let her dyskinesia show. “She was worried that people would be watching her, wondering what’s wrong with her…Now, she knows she’s not alone. A lot of women might be in places where they feel they’re the only one. Because that’s the impression we get. Doctors tell you, ‘It’s not very common in women. It’s not very common in young people. It’s not very common in certain parts of the country.’ So you think you’re the only one going through this.”
Connecting with women who understand your experiences, who have walked in your metaphorical shoes, is transformative and helps move you from isolation to community. There’s power and hope in community.
“You start to realize,” Sabela said, “that you have a network of people behind you, even if you’ve never met in person. That there’s someone out there who will listen to you and who will give you a hand. Sometimes, being heard—that’s all you need.”
In fact, Sabela believes that each woman’s superpower is sharing. She said life with Parkinson’s is not easy, there are dark moments, but sharing is “what makes our lives easier.” We learn from each other. We nod along because we’ve been there, too. We provide guidance and affirmation.
Fighting Against Disparities
It’s not just sharing that Con P de Párkinson is seeking. They’re also committed to expanding Spanish-language resources for people with movement disorders. “Having tools in your language is empowering to the umpteenth level,” Sabela said. It opens up understanding and education, and this creates new possibilities for living well with the disease.
“Just think about it,” Sabela told me, “How much do most Parkinson’s organizations dedicate to writing in English? To preparing documents, to preparing their websites? Their Spanish-speaking audience deserves the same attention.” The Hispanic community is not an aside. All people are worthy of the information they need to live well.
“The IRS reports of these organizations are public,” she said. “When I see the [disparity in funding for our Hispanic community], it’s a tough pill to swallow…People deserve to not feel neglected. No one should be left behind. Everyone should have the same access to care. The same access to information. And the same opportunity to ask questions.
Women Are Pivotal to Change
In order to best equip our Spanish-speaking community with the resources and education they need, Sabela believes that women are key. “There’s nothing monolithic,” she said, “but in the Hispanic and Latino world, traditionally,” there are pivotal people who are trusted and relied upon to disseminate information. “There’s the priest, there’s the doctor, and then, in the home, there are the women.”
“Women talk a lot,” she said, laughing. “Women come together to share stories and information. They will gather and talk for hours. And, so, without realizing it, we women are disseminators of information.”
If women have access to healthcare information in Spanish, the effect not only on themselves but their families and neighbors would be powerful.
The Balm of Storytelling
In the Parkinson’s community, we often use the metaphor of an iceberg to describe the experience of living with Parkinson’s. Part of the iceberg is visible, just as some motor symptoms are visible to others. But a large part of the iceberg is hidden beneath the water. In Parkinson’s, this often represents the non-motor symptoms, such as apathy, depression, or anxiety, which cannot be seen with just the eyes.
“We live in the Instagram world where everybody’s happy and smiling,” Sabela said, “and that’s just not the real world.” This is why Sabela believes one of the greatest gifts we can give each other is the truth of our stories. “Sure, we want to share pretty stories and pretty pictures, but there are times when you have to share the war stories, too. Know that that’s okay.”
By sharing our challenges, our dark climbs up the metaphorical mountain, Sabela believes we have the power to touch lives without even knowing it. “Just share your stories,” she said. “There will be someone, somewhere, who will be thankful for that story. You might never hear about them, you might never meet them, but just do it anyway.”
Stories remind us we’re not alone, in our joys and our struggles. And that’s comforting.
“It’s the most incredible and amazing way to connect,” Sabela said. “It makes me feel blessed for this very powerful community.”